Mission for Maddie

Thanks for taking the time to learn more about Maddie. I’m Donna Nicholas, and I’ve started this GoFundMe campaign to help support the Birchmeier family. Since she was three months old, I have enjoyed taking care of their precious daughter Madelynn. This little ray of sunshine that we affectionately call Maddie has stolen my heart. Two days a week, I am greeted by the happiest baby in the world. Behind that smile, though, is a debilitating condition known as Angelman Syndrome.

 

At first, Maddie was hitting all her milestones. Things were going just right, but slowly, Maddie missed specific vital benchmarks. I watched as her parents, Adam and Nicole, diligently tried to find answers. I’ve watched them take Maddie to specialist after specialist. I’ve watched as they make the hour and a half round trip drive each week to take Maddie to therapy. I prayed and hoped nothing was wrong as they sent out genetic testing.

 

Soon after they sent out that genetic testing, Maddie developed seizures. Adam and Nicole kept me updated as they spent three days at Helen DeVos Children’s Hospital. I was right there when they got home. They had to teach me how to use the emergency Diastat, just in case she had a seizure over five minutes long while I was with her.

 

The seizures were a precursor to Maddie’s diagnosis, Angelman Syndrome. One day, I knew something was wrong when Adam and Nicole came home from work early with the most solemn of expressions. They picked up Maddie, and the tears flowed. Angelman Syndrome affects the whole child. She may never walk, she may never talk, she will be at home for the rest of her life.

 

So far, that hasn’t stopped Maddie; you should hear her laugh or see her roll around on the floor. Typically she’s in search of the perfect toy. Then, she’ll cuddle right up to you and give you a big wet kiss. She’s a little spitfire and loves unconditionally. To Maddie, I am her Yaya.

 

Over the last year and a half, I have developed the most incredible relationship with Maddie, Nicole, and Adam. They have become family to me, and that is why I’ll do anything I can to help them. Throughout everything, Nicole and Adam have never complained. Instead, they have taken this diagnosis with grace and have shown that little girl the love only a parent can show.

 

There will be significant hurdles to overcome as they learn to navigate this difficult diagnosis. There are medications, therapeutic devices, travel expenses to out-of-state clinics, gas, time missed from work, and a whole host of unforeseen costs that no one can predict. Therefore, I am asking friends, family, and the community to come together and help this family financially. This precious angel will greatly benefit from your support.


Thank you from the bottom of my heart.

 

What is Angelman Syndrome?

Angelman Syndrome is a genetic disorder associated with the 15th chromosome. In Maddie’s case, part of this chromosome is missing, or deleted. Angelman Syndrome is a multifaceted syndrome that will affect her physical development as well as her cognitive ability. Children with Angelman Syndrome typically have a smaller head size, low muscle tone, and limited verbal communication.

Things are not all bad, however. Children with Angelman Syndrome typically are easily excitable  and have a sunny disposition. This is why it is sometimes referred to as “Happy Baby Syndrome”. Our Maddie will steal your heart with her smile and cuddle right up to you. She has challenges to overcome, but she will face them with the same enthusiasm that she brings to everyday life.